I live in Dallas and have AMN. Having a hard time finding any doctors that have any experience with it locally. I have had some neurologist at UT Southwestern over the years that have been helpful but they don't stay there long. I'm thinking of flying to Boston to see Dr. Eichler. Is anyone else seeing him and is their value in seeing him? Or can anyone recommend a neurologist in the Dallas are familiar with the condition? Thanks for any help!

Cowboys games were a waste of money last year but hopefully this year will be different. 😃

I'd like to share how doctors have been helpful to me in the past. Because of them, I have been put on hydrocortisone and monitored for Addisons. I have been prescribed baclofen for spasticity and so I can sleep. I have been referred to a urologist so I can self cath to avoid waking up all night. I've been referred for carbon fiber orthotics to aid in keeping my toes up when I walk so I don't trip. I've been given injections so I can have intimacy in my marriage. Lastly, I've participated in 2 clinical trials on my own that were available over seas but not in the US. I don't know what else is out there that can help nor do I know how I compare to others with our condition so I can know what I have to look forward to. I was thinking Dr. Eichler had more cases and perhaps could provide some insight or refer someone locally or, like you said, provide consultation on a regular basis without having to visit.

aldconnect.org/contact_us.php I've connected with several of them in the past, they're great people. Thankfully we live in a connected world so, most of the info is available online. I think the group would be interested in the clinical trials you were involved in. Think they have a conference coming up in November, it would be cool if you came and shared your story with them. I can't speak for them but I'm sure they would love to hear your experiences..

I think it is entirely reasonable to think about visiting Dr Eichler. Over here in the U.K. we have met him several times, most recently at our ALD/AMN patient weekend here. As a matter of fact, you can see his presentation he gave us here a few weeks ago.

He is a very kind and helpful Doctor so if you were to give him a call I think he would try to assist one way or another. As others have said, AMN has no cure but some therapies are helpful, especially with things like spasticity. The value on going to see someone like Dr Eichler is that he has experience with AMN, so he can base any advice on what he has seen with others. Experience of dealing with AMN is not very widespread, so that's where his value lies. He is also active with new trials etc.

I have seen him for 10 years or so. The practice is heavy mix of MS patients. He is familiar because of me on AMN. Since there is not a lot that can be done directly, we focus on the symptoms. Since the symptoms mimic MS, the practice has lots of treatment.

Dr. Greenfield was part of the resident tag team at UTSW when I was being diagnosed by Dr. Rosenberg in 1994.

I had been seeing Dr Elliot Frohman at UTSW. He was very familiar since he had spent time at Johns Hopkins at Kennedy Krieger but he became to hard to see.

Greenfield is very open to trying things when I find new things. He is laid back and not aggressive on the meds. He definitely does not want to do harm.

For the most part, I take Gabapentin and Baclofen, mostly at night. He allows me to vary the dosages based on the day. That is all I take for the AMN.

I have found that dropping weight has been the best thing and using a NuStep recumbent elliptical.